ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

[WilliamS]

This is what one of the nurses wrote about Creon on another thread:-

"The normal pancreas produces up to 720,000 units of enzymes (lipase - one of the enzymes, but also the others as well), and that we need about 10% minimum of this to digest a meal properly (this is a normal meal! ) = 72,000 units of enzymes. If the meal is fattier, you need more.

All of our information also states that you can't overdose on this and that there is no "upper limit" dose, so basically, he can take as much as he needs to correct his symptoms and halt the weight loss.

If his symptoms are not improving, and he carries on losing weight, then he needs more. Please take more rather than less - he will not harm himself at all.

Kind regards,

Jeni."

Hope this helps and that the symptoms can be relieved a little. Best wishes.

[sandraW]

Hi Martine,

No different advice to offer, just wanted to let you know I am thinking of you and Allen, hope he improves soon, take care love sandrax xx

[knutsford4]

Thanks everyone, he has increased his creon, he has diarreira at least 5 times a day and yes it's yellow fifi

[Guest]

If it's yellow then he definitely needs more creon. The fat isn't breaking down. Try and get him to keep sipping water to keep hydrated. You can up he creon considerably.

If the creon still doesn't work, try opening it up and sprinkling it in mashed banana or apple sauce, but it jeeds to be eaten within 20 minutes at the most for it to work. It activates the minute you open it. Is he taking codeine as well? That can help with diarrhoea.

Leila xx

[knutsford4]

He takes the creon just before he starts eating, Leila no codeine because he's dose is just 25g per capsal, he takes one with each meal which is a total of 75g per day, I told him to up his dose, today he took 50g with his dinner, just in and he threw his dinner up, I'm trying to get him to take one every time he consums ant sort of food, x

[Guest]

I don't know anything about sickness, Dad never suffered with it. He suffered very severely with diarrhoea though. dad used to have 12, 40,000 creon with a standard meal. He only ever had the 40,000.

[Guest]

While ever the diarrhoea is still yellow, then more creon is needed.

Sorry if I haven't read it right, but I don't understand why he can't take codeine?

Leila

[Guest]

What strength creon is he taking? I know you say 75g, but creon is in 10,0000, 20,0000 and 40,000, I don't knkw what 75g is.

I really want to help you. I know how much diarrhoea can affect your life and get you down.

Leila xxx

[knutsford4]

Sorry he's on 25,000 we can't get the 40,0000 one here, yea he can take codeine, just we didn't know about it, we r seeing the doc tomorrow about his scan results, so will ask about the codeine Leila, OMG fifi 12 at one time, I struggle with him taking the two I give him tonight with his tea, I will have to talk to him and try and make him take more, thanks for your replies, I feel very alone on this journey with Allen it glad your on the end of my computer lol x

[Guest]

25.000 is no where near enough. Not even 2 of them. Is he struggling to swallow them? If just before he eats a meal, you out some mashed banana or apple sauce on a little bowl, open the creon and sprinkle it on top. Don't stir it in. And he eat it like that. It will work the same.

Leila xx

[Sueoliver]

Hi Martine,

It is really important to up the creon tablets. My Mum doesn't like them either but she finds swallowing the smaller ones easier. She takes 2 with a snack and 6 with each meal although they are very small portions! I think she should take even more really although this amount has helped her. Try and get him to take more. I am so sorry that he is struggling at the moment. There are so many twists and turns with this evil disease. Please ring the nurses on here as well as they are so knowledgeable and easy to talk to. I think you will find them a great help.

Take care of yourself as well.

Love Sue xxx

[knutsford4]

Thanks use, he has started to up his dose, so far today he has had 8 which is great, but we had the results of his scan to day and his tumour has grown by 20% in 9 weeks so we r heartbroken, now just living life to the full they said it will be only months now

[Guest]

How are the creons doing? Is the diarrhoea still yellow?

Please don't be on countdown, I know that is hard, I did it myself for quite a while. He could very well have longer than they say. This disease is so cruel.

Leila xx

[knutsford4]

Hi Leila

Sometimes it is yellow, early morning it's normal stools, he has had it for over a week now, he has up his creon to 10 a day, I'm so worried because he has booked a cruise for us next week I feel so sick with worry, I know he's not going to die this quick but we have stopped the Phonix tears, and I'm not sure if his pain which is back now has something to do with the loose stools r not, is his meds running through him before they can work, he is fine with pain when he has no diarreira, also, can I get a bit of advice of juicing r blending fruits/veggies which are high in calories, he is not one for that type of food but at this stage he needs calories and can he take dioralight with Loperamide which he has started taking for the diarrhoea,

I hate to go on but I'm just lost at this stage, we don't like to keep phoning the nurses r doctors, I hate to be a burden with question, which is why this is a great site for me

Thank you

[sandraW]

Hi Martine,

Have you spoken to the nurses on here, they are really great, you are not being a nuisance, they will be only too pleased to help you.

The problem with blending fruit and vegetables, might be one they are not that high in calories and two they might even make the diarrhoea worse.

Please speak to the nurses, I am sure they will be able to help you, I am loathe to offer advice in case it makes your situation worse. sending love sandrax xx

[Guest]

What is he typically eating?

Not sure about blending food. My Dad had severe diarrhoea all the way through his illness, and soup did make it so much worse for him, as did spicy food and very rich food like cream and chocolate. Steak was good for him, and vegetables.

Is he able ti drink? Dad really struggle to take a long drink of water, he had to sip. He was on a number of medications, all that was suppose to constipate him, nothing even came close.

I can give you a list of all Dad's medications for you to try, but like Sandra said, I don't want to make the symptoms worse. Is the diarrhoea increasing during the day?

I am sorry to read that you feel like a burden to the doctors. Please don't feel a burden. It is their job. It is what they are being paid for. You are no burden, and so what what they may think. If they think anything bad of you, then they are terrible people and they shouldn't be doing this job.

I would call the nurses in here, they will help you I promise.

Leila xx

[Marieb]

Hi, it sounds like you are having an awful time of it. Please don't ever feel you are a burden. Ask all the questions you need to. Ask for a dietician referral if you haven't already. I certainly found that a godsend.

I have a Specialist Nurse who I can phone during the day and I find her to be wonderful as are our chemo clinic nurses.

My particular problem is that one moment I can have severe diorreah and the next be constipated. It's really hard and having to digest croon when you are struggling with appetite, taste etc is very difficult.

Keep seeking advice, ask lots of questions of your team...they are there to help..and if you feel you are getting a negative response then get onto that...the emotional side of this terrible disease is equally as difficult as the physical side.

Keep strong, we will all support you in any way we can. You are doing a great job.

Marie X

[knutsford4]

Thanks everyone

He seems to have the diarrhoea under control now, we think his meds were running through him so that was y he was in pain again, he eats whatever he feels he can hold down which could be anything from a salad to pie and chips, he has increased his Creon to 10 a day and it seems to be working, yesterday and today he has great, he's out doing a bit of shopping lol, life is truly a rollercoaster, nurse came out yesterday and give me her mobile number, lovely girl, so feel relieved we had support now

Thank you again xxx

[Sueoliver]

Hi Martine,

Glad the creon seems to be helping. Maybe he can up it some more when he is ready. Your post sounds much more positive so I am really pleased for you.

Stay strong.

Love Sue x

[Guest]

So pleased the creons seem to be working, must make him feel so much better, and state of mind is so very important.

Like Sue said, he can up the creons at any time he may need to, the dosage is purely on what his body needs.

Leila xx

[knutsford4]

Hi everyone, Allen has been great, from last Saturday he has put a scaffold around r house it's 3 story and painted it, crazy they give him 8 months to live he books a cruise and does the work of a team of men, he got his diarraea under control, but it came back in Wednesday night, so he fasted for 24 hours this seem to work but his stomach has just left him again and we r leaving in 3 hours for me flight for a weeks cruise, so afraid now he keeps telling me he's good and nothing will happen but I don't know if I'm imagining it but he seems to be fading away in front of me x

[Didge]

Goodness, I hope the cruise goes well. You certainly both deserve it! xxx

[sandraW]

I hope you both have a lovely time, and that Allen is okay while you are away, he certainly deserves a break after all that painting, love sandrax xx

[Marieb]

Hi,

I really hope you both enjoy your cruise. You really have been through the mills with this.

I hope you are also now getting the support you need from the professionals. When I read the different threads on this site it can seem like a real post code lottery with some of us feeling like we have everything we need in our clinical care and others feeling out on a limb.

I am lucky enough to have a wonderful team at our local rural hospital, backed up by the specialist centre. I have a specialist nurse who coordinates everything between the GP, hospital, dietician, visits if I am admitted via A&E etc. There is also additional support to cover the emotional side such as counciling groups, massage, leisure activities etc.

It sounds like you have been very much on your own in all of this which must be incredibly difficult.

Enjoy your holiday together and let's hope it goes without any problems.

I can't believe your strength, you are doing a fantastic job.

Marie X